3 months after being on Prednisone, I am still plagued w anxiety, fearfulness and difficulty getting to sleep. When will This end?
That’s “off” NOT “on”
I am sorry to read that you are having such problems. I think they are probably not unusual but not at all pleasant and quite unnerving. I am having a similar problem at 3mgs which varies from day to day but I find that if I am busy and more relaxed I don't notice this so much. I don't know the answer but I don't have caffeine and if I am unable to get to sleep I get up and make a cup of camomile tea which helps. I find that if, foolishly, I am using a screen even briefly before bed that it affects my sleep and causes me difficulty in dropping off. I think the feelings are part of the withdrawal but someone more knowledgeable than I will be along to address the problem. I'll be interested in anything that helps. I hope it eases soon for you.
Hi Babazaga
You have to give time for your adrenals and cortisol to kick in again. They have been suppressed by the Preds. If you are having anxiety and unable to sleep go see your do your and request a mild medication to relax you.....i'm sure your doctor will help...
Hi Babazaga
Forgot to mention your symptoms are typical withdrawal symptoms after pred so doctor will understand what you are going through....
At the beginning of my journey I couldn't sleep a wink and my rheumy told me to take Nytol, the stronger one from the chemist. I took it for a few weeks and it really helped Once the pain was under control I started to sleep. He said we need to sleep in order to help our bodies cope. Good luck and you will feel better soon.
It is felt that it can take up to a year for the body and adrenal function to settle down after being on pred. And the symptoms you desccribe would be pretty characteristic of that.
Sorry - I really DO appreciate that isn't what you wanted to hear. One friend with PMR found that one of the Nytols helped her a lot with sleep problems. I can't remember exactly which one but I'm equally sure that everyone will react differently so a bit of experimentation may be called for. Is there one in a green pack? That rings a bell somehow...
Snap!!!!!!!
I think it is a duck egg bluey colour packet.
I did not have that problem my first go around with PMR. I'm waiting for confirmation of my second PMR diagnosis now.. However, I have never had an easy time falling asleep and find that 5mg of Melatonin and a cup of camomile tea does a great job. I have no next morning hangover and do get a restful sleep. Why not ask your physician if you can use Melatonin.
I feel for you having suffered similarly when I was on Pred. Have bee symptom free for over foyr years now
Is it all the time or can you associate it with the time you take your Pred.?
What dose are you on and is it PMR, GCA or both? I guess as you are only three months in you will be on the starter dose
which is usually 15 to 25 for PMR but much higher, maybe 60 if it's GCA.
I ask about the time you take you pred. because my GP said it might help to take in the evening instead of morning and it worked for me.
Hope you get it sorted; I know how exhausting it can be.
It is not recommended to use melatonin together with corticosteroids - the supplement may make the steroids less effective and you may need a higher dose of pred as a result. Melatinonin is also not available in the UK except on prescription and for a quite narrow indication.
Apologies; I completely misunderstood your first post so my reply was not much use. I read it as though you had just started on Pred. three months ago not been off it. Good job others were more switched on than I was.
As Eileen says melatonin should not be used with steroids. If you do it can actually work in the opposite way you think and cause insomnia and depression. You should not take melatonin without checking with your doctor first.
Thanks ..... that's why I suggested to ask the doctor.
Was not aware of that so I did some research on it. But that is why I also tell any medical professional what supplements I'm taking. Guess when my treatment starts I'll have to find something that can be used with prednisone.
I wasn't aware that Melatonin needed a prescription in the UK. It is sold as a supplement here in the US, in 3 and 5 mg.
Thanks Eileen
We do always tell people to check - though your average GP hasn't a clue! Pharmacists can be good - or sometimes not...
I always mention when I know US/UK things are different - people can get so upset when they discover how different the systems are! Quite a few thigs you can't have in the UK - some good, some less so!
We can get melatonin here. But have you tried valerian? That's good to help break a pattern of bad sleep. I used it a bit long ago pre-PMR/pred. It gave me what I felt was a really good quality of sleep. But I think the effect wears off quickly so you'd just use it for a few days to break the bad habit, and then maybe occasionally thereafter, not very night.
My last primary physician knew enough for a diagnosis but that was about it. Since we transferred to Michigan my primary is an internist and has a lot more knowledge of PMR. I didn't think it was a recurrence, he was the one that told me I didn't need all the symptoms for it to be PMR. Although I hope he refers me to a Rheumatologist especially as I will be on prednisone.
I have family in Northern Ireland so I know there are differences, some are good, some not so good. But I guess that is in every system.
I'm curious .... do you know why melatonin is a prescription only supplement?
I haven't tried it. Don't know much about it other than that it is a root. I'm leery of it as Melatonin is something that our bodies already produce which minimizes potential side effects. Valerian, although not man made can still cause reactions. I'm very "funny" about taking any supplements or meds...(my doctor hates me for that! LOL)